Hi All,
Thanks for looking and commenting.
The rest of this post is Totally Off Topic and in reply to Chuck's
comment about Cai
Hi Chuck,
Amongst his many issues Cai is missing parts of his nervous system and
some bits are "wired" wrongly, hence it took a while to find out a that
he had broken his leg and b where the break was, All indications were
upper leg or knee yet when we finally worked it out it was the lower leg.
one portion of nerve that we know is missing is the one to his nose and
as the sense of smell is linked with taste we were never sure, and
because his vocal chords were paralysed when born he never learnt the
swallow reflux (imagine how difficult it is to teach that) and has been
tube fed directly to his stomach since birth so he never properly had
the chance to associate hunger (if he feels that) with eating.
He has come a very long way since he was born and it is an exciting,
amazing and sometimes a sad and frustrating journey he chose to take us
on (going on the theory that kids choose their parents) but I wouldn't
have changed it .
I posted this in a closed forum on FB recently
Cure for Downs Syndrome -
http://www.independent.co.uk/voices/comment/would-i-want-my-daughter-cured-the-dilemma-of-a-father-whose-child-has-downs-syndrome-8329341.html
<http://www.independent.co.uk/voices/comment/would-i-want-my-daughter-cured-the-dilemma-of-a-father-whose-child-has-downs-syndrome-8329341.html>
I feel the same as the father as he states here although he is
obviously referring to Downs Syndrome and its symptoms and not
"You might think so; but in a recent survey of Canadian
parents with Down’s Syndrome children, 27 per cent said that
if there were a “cure” for their offspring’s condition, they
would not use it. A further 32 per cent said they were unsure
if they would take advantage of it. This result was described
as “surprising” by The New York Times; but it is not really
surprising at all. My 17-year-old younger daughter, who has
the condition, is what she is; and that is the person her
parents and sister know and love. If she were genetically
re-engineered, would she be the same person? She would
certainly be very different; with the ability to count or read
a clock, possibly even to penetrate the secrets of calculus:
but those are not the sort of attributes which define what we
love in those to whom we are closest."
but wonder if that is selfish of me and would Cai feel the
same which only he can answer.
and here are some comments made by other Charge parents.
I cut off the bulk of this comment as it was mainly a quote from a blog,
Facebook person A
#
And then I thought: People become attached to their children with
whatever their flaws are. I'm attached to my children with whatever
flaws they have. And if some glorious angel broke through the living
room ceiling and offered to exchange them for other, better children,
I'd cling to my kids and pray away this specter. We all love flawed
children, and the general assumption that these more extreme flaws make
the children somehow unlovable, it wasn't true to most of my experience."
http://www.npr.org/2012/11/12/164958401/parenting-a-child-whos-fallen-far-from-the-tree
<http://www.facebook.com/groups/379660102089572/permalink/423142071074708/?comment_id=423331551055760&offset=0&total_comments=4><http://www.facebook.com/groups/379660102089572/#>
Facebook Person B
#
#
I thought the above quote from an interview with Andrew Solomon, the
author of "Far from the Tree" might be useful here. What the mother
articulates so well in this passage is something I very much felt when
our son with CHARGE was about a year old. <3
Me :-)
#
Ian Wilcox <http://www.facebook.com/ian.wilcox>I feel that too but
thought it was just stockholm syndrome ;-) :-)
#
<http://www.facebook.com/groups/379660102089572/permalink/423142071074708/?comment_id=423500544372194&offset=0&total_comments=4><http://www.facebook.com/browse/likes?id=423500544372194>
Thanks for heads up I will investigate the slideshow
On 27/11/2012 14:16, Chuck Norcutt wrote:
> I loved the "lone tree" and the "stalking leaf". Also, I obviously have
> a very incomplete knowledge of Cai's condition if a sense of taste and
> feeling hunger are concerns. I can understand your joy that he's eating
> well.
>
>
>
>
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>
--
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